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Speaker 1: And we know that on the weekend there is set

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Speaker 1: to be a really special event which is happening in Palmerston.

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Speaker 1: It's aiming to raise awareness of childhood on set heart

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Speaker 1: disease and also pay tribute to those who have died

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Speaker 1: and heart Kids is hosting its two Feet and a

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Speaker 1: Heartbeat Walk. It's happening at Marlow's Lagoon this Sunday to

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Speaker 1: also unite and support bereaved parents and joining us live

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Speaker 1: on the line to talk a little bit more about

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Speaker 1: the event. It is heart Kids Chief of Support Services

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Speaker 1: and Impact, Tanya Ports. Good morning to you.

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Speaker 2: Tanya, good morning, how are you yeah, really good?

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Speaker 1: Thank you so much for your time this morning. Tanya

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Speaker 1: tell us a little bit more about the event that's.

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Speaker 2: Happening absolutely well. Heart Kids two Feet and a Heartbeat

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Speaker 2: Walk has been happening since twenty fourteenth, so this is

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Speaker 2: our ten year celebration which is really exciting and it's

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Speaker 2: a walk that brings people together who impacted by childhood

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Speaker 2: on set heart disease and a chance for families that

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Speaker 2: are impacted by a childhood onset heart disease to get

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Speaker 2: together support one another, also their networks and friends and

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Speaker 2: to do a walk in memory of the four lives

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Speaker 2: that we lose to COHD each week, and also in

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Speaker 2: recognition of the eight babies born each day across Australia

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Speaker 2: with COHD.

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Speaker 1: To those out there listening who maybe don't know a

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Speaker 1: huge amount about childhood on set heart disease, can you

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Speaker 1: explain to our listeners exactly what it is?

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Speaker 2: Yeah, So, childhood onset heart disease can combine two different things.

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Speaker 2: One is congenital heart disease, so obviously a child that

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Speaker 2: is born with a heart condition, and there are many

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Speaker 2: different heart conditions that children might be born with, and

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Speaker 2: also childhood acquired heart disease, and that includes a number

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Speaker 2: of things including rhematic heart disease and commonitis disease. So

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Speaker 2: it's yeah, it's very prevalent because one in every hundred

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Speaker 2: babies born has a child a congenital heart condition, and

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Speaker 2: of course then other children acquire different conditions for different

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Speaker 2: reasons throughout their lives. So it's far more common than

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Speaker 2: people realize.

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Speaker 1: Yeah, it is. It is so common. My little cousin,

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Speaker 1: well she's not so little anymore. She is in her twenties,

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Speaker 1: thank goodness, and she was born with a congenital heart

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Speaker 1: defect and I know it's you know, it's something that

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Speaker 1: she's had to grapple with all throughout her life and

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Speaker 1: still continues to you know, still continues to be in

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Speaker 1: hospital at different times and requiring treatment and operations, and

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Speaker 1: it's something that impacts a lot of young people in Australia.

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Speaker 1: So this is a real opportunity, I guess for everybody

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Speaker 1: to get together, raise that awareness and and you know,

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Speaker 1: sort of to think of each other as well.

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Speaker 2: Absolutely nothing. Obviously you have firsthand experience of your family

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Speaker 2: with this, but nothing beats talking to other people that

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Speaker 2: have gone through a similar journey and understand what it

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Speaker 2: is you're facing and perhaps what that feels like when

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Speaker 2: a hospital time is coming up and possible surgery, or

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Speaker 2: just understanding the challenges of every day to day. And

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Speaker 2: yet nothing beats getting together and having a chance to

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Speaker 2: support one another. At you and your family, your extended

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Speaker 2: family would no personally.

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Speaker 1: I mean you touched on as well. Rheumatic heart. That

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Speaker 1: is something that's really prevalent in the Northern Territory, isn't it.

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Speaker 2: Absolutely yeah. Rheumatic heart disease disproportionately affects our brigonal entirest

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Speaker 2: island and communities, and in the Northern Territory of course,

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Speaker 2: we have a very large population of people that are

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Speaker 2: impacted by RhD and heart kids. Do obvious to support

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Speaker 2: both groups people with congenital conditions but also childhood acquired

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Speaker 2: heart conditions, and particularly in the territory working with the

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Speaker 2: Royal Dalen Hospital and staff and other organizations up there

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Speaker 2: to support our rabbisial turists at our families as well.

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Speaker 2: We'd love to see the end of that.

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Speaker 1: That's the plan, Tanya, in terms of some of the

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Speaker 1: supports that are available here in the Northern Territory. What

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Speaker 1: you know, I mean when you look at this across

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Speaker 1: the board, what treatment options are available and what kind

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Speaker 1: of support is available in the Northern Territory well as far.

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Speaker 2: As treatment options go, of course, there's so many different

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Speaker 2: conditions and the amazing cardiologists and surgeons around the country,

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Speaker 2: they're absolute rock stars. They do a phenomenal job in

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Speaker 2: looking after our kids and teens and adults that have

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Speaker 2: impacted our COOHD. Of course, each one of those journeys

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Speaker 2: is different and obviously their doctors that the medical teams

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Speaker 2: are there to walk through those with them, and heart

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Speaker 2: kids fills the gap where it comes to community support.

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Speaker 2: So we partner with all of the major children's hospitals

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Speaker 2: around the country as well as many other peripheral clinics

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Speaker 2: and other organizations. And the person's journey doesn't finish, of

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Speaker 2: course when they're in hospital having surgery, but then they

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Speaker 2: get to go home and think, well, now what do

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Speaker 2: I do? You know, how do I manage each day?

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Speaker 2: How do I know support the rest of my family

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Speaker 2: for from a parents' perspective, And that's obviously where heart

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Speaker 2: Kids really steps in. We've got a huge library of

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Speaker 2: resources on our website which is heart Kids dot org

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Speaker 2: dot a youth and of course our support coordinators providing

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Speaker 2: local support, get to run events and catch up with

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Speaker 2: families one to one, provide support at those clinics and

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Speaker 2: help them navigate their individual journeys, you know, pointing them

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Speaker 2: in direction of resources both within heart Kids and outside

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Speaker 2: of heart Kids, and just helping make that journey you know,

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Speaker 2: a little easier and take some of the pressure off

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Speaker 2: where we can.

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Speaker 1: Now obviously we have got as I understand it, the

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Speaker 1: walk is taking place. Is it happening in thirty locations

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Speaker 1: across Australia.

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Speaker 2: This year, did you say, it's fantastic. We've got thirty

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Speaker 2: two locations across Australia, which is an absolute record, and

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Speaker 2: they run what they started on the twelfth of October

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Speaker 2: and this weekend is the last weekend and it's been

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Speaker 2: so exciting. We've had so many people involved and we're

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Speaker 2: so grateful to those that have already walked and those

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Speaker 2: that are still coming up. And of course one of

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Speaker 2: those walks this weekend. There's five this weekend or the

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Speaker 2: last five, and of course one of those is in Palmerston,

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Speaker 2: which is wonderful.

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Speaker 1: It is wonderful. Is this the first time that it's

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Speaker 1: happened in Palmerston? Do you know, Dania, or have we

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Speaker 1: had one before the.

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Speaker 2: Third time we've done it in Palmerston. We have done

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Speaker 2: a couple over the years in Darwin itself. But it's

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Speaker 2: great to see new families getting involved and old families

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Speaker 2: who have been connected with Heart Kids for quite a

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Speaker 2: long time still getting involved in supporting that. So it's

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Speaker 2: very few to our hearts.

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Speaker 1: Yeah, odd is wonderful. I think it's such a great event.

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Speaker 1: Now to anybody listening who does want to get involved

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Speaker 1: or maybe wants to donate or want some more detail

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Speaker 1: about what heart Kids does, where can they go to?

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Speaker 2: Well the best please to go to to get all

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Speaker 2: the up to date details into our website which is

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Speaker 2: heart Kids dot or dot au and there's a link

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Speaker 2: there that will take you through to the two feet

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Speaker 2: and a Heartbeat activities, so check that out first and

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Speaker 2: then if you're unable to register beforehand, please go along

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Speaker 2: on the day and support the team and they would

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Speaker 2: absolutely love to have more people involved through well.

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Speaker 1: Heart Kids Chief of Support Services and Impact, Tanya pots

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Speaker 1: I really appreciate your time this morning, thanks for having

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Speaker 1: a chat with us.

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Speaker 2: Thank you very much, and thank you so much for

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Speaker 2: your support of the work we're doing.

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Speaker 1: Anytime, Thank you,